Fighting a Hard Battle

This past fall, I finally had to leave my job due to my illness. I tried very hard to manage my illness by making dietary and other health changes, so that I could continue working as long as possible. I absolutely loved my job as a school librarian and it was a tough decision for me to leave behind a career that I felt very called to do. My primary care physician had been suggesting the possibility of me applying for disability for well over a year. He isn’t the type to issue a stop work order and wanted me to come to terms of the seriousness of my illness on my own. So being that I am extremely determined, and well lets just say stubborn, I continued to push myself harder than I should. And I got very sick. Basically it came down to a point where I was so sick that I didn’t even have the option to continue what I was doing.

I have been embarrassed about my situation and honestly haven’t been very open with family and friends. So, I didn’t feel like sharing what I have been going through with strangers on the Internet. There is a social stigma that comes along with being disabled and I have not been very comfortable with the association. Some people think that Social Security Disability is a welfare system for people that are too lazy to work. That is simply not the truth. Social Security Disability is public assistance for people who are unable to work and it is a program that I have paid into while being employed. While I feel that I am entitled to receive benefits, it is a tough battle to fight. I know that there are always people that try to take advantage of the system, and this has made it harder for people that are actually justified in receiving benefits to get the benefits that they need. I hear stories everyday about people that cannot walk being denied benefits. I also hear about people getting their first check after they have already died.

Fibromyalgia is an illness that is diagnosed by process of elimination, as well as the symptoms the patient has. Pain is all subjective and there is no blood test that will tell my doctor how sick I am. I have a medical history that is a foot high when it is printed out, but I have been denied not only Social Security Disability benefits, but also benefits from a Long Term Disability policy I had paid into for several years. This of course increases my stress and anxiety, making my condition more difficult to manage. I have had to hire a lawyer to represent my case, but I am told it could take up to two years to receive any benefits.

What seemed to be missing from my case was some sort of blood work that was abnormal. Of course I have had a few things like high cholesterol and high insulin, but those aren’t considered debilitating. I may report pain to my doctors and they note it in my chart, but there is no test that shows how bad I hurt. Just my words….until two days ago.

Two days ago I was contacted by a clinic that had run a blood test for me. I went to see a new doctor after posting a message in an online chronic pain discussion group. An individual contacted me and said that they thought I should get tested for Lyme Disease. I am familiar with Lyme Disease because my mother has suffered for many years with the illness. When I first became sick, I requested that my doctor test me for Lyme. All my symptoms mimicked what my mother had, so I thought that I might have it too. More than five years ago when I became symptomatic with what doctors thought was Fibromyalgia, my ELISA Lyme Disease blood test came back as negative. So I just brushed the idea aside that I might have Lyme Disease and trusted that my doctors would find what was wrong with me. The ELISA Lyme test has been notoriously bad at actually giving doctors the ability to diagnose Lyme Disease. I mistakenly thought however that testing would have improved in the 20+ years since my own mother was diagnosed. It turns out I made a bad assumption and my original ELISA Lyme test was a false negative. But two days ago my Western Blot test for Lyme Disease by IgeneX came back as being positive. I have Lyme Disease.

Hopefully this new diagnosis will help me find better treatment for my illness. I may even recover from all of my food sensitivities! I am also hopeful that this new diagnosis will help solidify my disability case. But who knows. Believe it or not, Lyme Disease is even more controversial than Fibromyalgia and Chronic Fatigue Syndrome. Lyme Disease is often misdiagnosed as Fibro/CFS. If you want to learn more about Lyme Disease and how you might get tested, please see the resources listed below.

LymeNet
Proper diagnosis and treatment is essential. Find a Lyme literate doctor (LLMD) near you. Click on the “Flash Discussion” link on the left hand side. Find the discussion “Seeking a Doctor” to get a referral. Many doctors have lost their practice for treating this controversial disease, so patients are referred very discretely.

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Thank you for this post. I rarely speak about it (for the exact reasons that you wrote about) but I have fibro and live a gluten and sugar free lifestyle to help with the symtoms. I’ve had every test under the sun but I will most certainly be calling my doctors to check about the lyme test tomorrow. I understand intimately how hard it can be to leave a job you love because of a disability. I miss teaching preschool very much but have learned to enjoy writing and speaking with teens on empowerment in a whole new way. It is nice to see someone with a similar story being so brave and inspiring.

Please please please make sure you see a Lyme Literate Doctor (a.k.a LLMD). Not all doctors know how to diagnose Lyme disease properly. If you think Fibro was a tricky, controversial diagnosis to receive, Lyme is that times ten.

My family physician ordered the ELISA Lyme test five years ago, when I demanded he do so because I recognized my symptoms were so similar to my Mother who has suffered from chronic Lyme Disease for years. That test came back a false negative.

Mid June, I had another ELISA Lyme test ordered. That came back negative as well. A false negative just a couple of weeks before receiving my Igenex Western Blot positive.

Your average run of the mill doctor or even Infectious Disease Physician will not treat Lyme aggressively, even if you test positive. Sadly most LLMDs will not file medical claims with your insurance, so you have to pay out of pocket up front to receive care. They will give you documentation you need to file a claim, but many insurance companies deny these claims. I paid around $300 for my appointment, plus test.

In December I will be going to see a new specialist. I will be paying $400 for my initial visit. My 5 year old son will be joining me. He just tested Lyme positive this past week. Many LLMDs will have a family plan, and our new doctor will see both of us for $600, out of pocket. It isn’t uncommon for whole families to have Lyme because they live in the same area and have similar exposure risks.

Unfortunately when individuals are exhibiting Fibro/CFS symptoms like we are, Lyme is already in the late disseminated stage. Treatment outcomes are much better when Lyme is caught early. I am hopeful that my son will recover fully because his tick bites were only last May.

Mainstream doctors feel that Lyme disease is hard to get and easy to cure. I’ve been searching for a middle ground in this great Lyme debacle. I am searching for answers and coming up short.

I wish you the best of luck in finding a new diagnosis. Please let me know if you have any questions. I’ve been feeling that my Lyme diagnosis is grim, but I think it is not the end of the world. If nothing else it offers a new treatment plan to relieve some of our pain. I appreciate your kind words. Please take care of yourself.

Just stumbled on your blog and wanted to know if you have ever heard of the LEAP diet for fibromyalgia? I would recommend looking into it and could help you find a CLT in your area. I hope you can find some relief!